A Letter from Suzanne

Greetings Everyone,

I am thrilled to present an issue of our magazine that shows admiration and appreciation for all those who are caregivers, not only to us lupians, but the world. For some of us, “we can’t even imagine,” what being a caregiver is like. This quote says a lot.

“There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” – Rosalyn Carter

Why author this article? This past winter has been a heartbreaker for myself and my family. The losses were great. The losses for many of you have had equal or greater pain. We can’t even imagine. Many of us became caregivers or needed a caregiver. Fewer were on the sidelines.

My phone had a constant flood of calls from people who shared so much sadness in their lives. Many of them became caregivers unexpectedly overnight. During this recent surge of the COVID pandemic, many families found themselves caring for their loved ones at home. Those who had family in nursing homes or retirement homes brought them home to care for to protect them from the virus. Others had the virus in their homes that just kept bouncing off each family member. Too many lost loved ones. All of this was happening so fast and so unexpected. Yet, you rose. Typical of us lupians we adjust, adapt, and conquer.

Usually during February, I like to write about love and romance. This year things are so different and there is so much sadness I am fearful that love and romance are overshadowed by all the grief. Still, I look at the love that filled our lives during these challenging times. The reality is that in order to be a caregiver you must first have love in you that you are willing to share unconditionally. This love you are willing to give of yourself to someone else. I wanted to take a look at this kind of love.

My sister cared daily for my 98-year father. She would encourage myself and my siblings to visit more often, because she felt we were missing this wonderful part of our father’s journey. Although challenging to care for him. It was rewarding and fulfilling for her. He depended on her. The love he had for her we can only imagine. My brother-in-law cared for his wife for the past 19 years (kidney cancer). He is an angel. He knew her every move and beckoned to her every need. He was like a robot. This robot (the steel man) had a giant heart. You looked at him and all you saw was love. It was like magic. A true love story.

We lost both of them just before Christmas this year. Life is like a ripple in a stream. It comes and goes. But the love and the memories they left continue to flow throughout the lives of those left behind. The love of the caregiver is priceless. Yes, some of us pay for caregiver service, but for many more it is a family member, a friend, and often a stranger.

As people living with a chronic illness, how do we respond to those that care for us? I want you to take some time and think about the people that lift you up on a daily basis. How do we see them? How do we treat them? Do we truly know what it takes to be a caregiver and do we even care? Do we take them for granted? What are our expectations? Are we demanding? Do we know what sacrifices they make to care for us? Are they even capable of being a caregiver? The list of questions can go on and on.

I am a seasoned professional patient. Through my journey with lupus there were many peaks and valleys. Looking back at my worst flare years, I had a host of caregivers. Many included my family, even my children. There were many hospitalizations along the way, I had many needs. At one point I was in a rehabilitation facility for two months.

There is not enough room in this magazine to reflect on all of it, although some are entertaining and others frightful. Someday we will meet for coffee and have a good laugh or a good tear.

The point is, I did not stop to even think about these precious, priceless people who took their time to care for me and fill my needs. It saddens me now to actually recognize this. I only focused on me, I lost my love of humanity.

For decades I have sat with thousands of my fellow lupians, their family, and friends. I did see the caregivers. I did see the lupians. I did see the reality that I was not the only one lost in humanity. All too often I take these caregivers for granted and we have huge expectations of them. Thankfully here comes that thing we call LOVE. The caregivers allow those they care for to behave poorly. They know the need is real. They know we need care. They are empathic to our situation. They know that with their care things are better and so they give of themselves because they love us.

I feel remorseful and I feel I should lead all of us that have caregivers to be better at humanity when it comes to those who care for us. That is why I will be sharing my fondness of caregivers to you throughout the year. This chapter will have a class for caregivers, and we will remind our constituents that we can be better aware of those who give us care and to extend gratitude and respect to these priceless people in our lives.

Let us all try and do a better job at returning the love we receive to those who are caregivers to us. Please really give thought to this and if you own it like me then let us make changes together.

Remember, time whether it is yours or someone else’s is something you cannot get back once it happens. So, guard your time, use it wisely, and respect others too. No matter what you do in life, what you have or who you are, spend your time wisely.

This magazine is filled with wonderful stories of this type of love. I hope they inspire you. Enclosed are a few quotes I hope you find encouraging. As always, during your lupus journey you are not alone, we are here for you.

With love, Suzanne

“No matter what you’ve done for yourself or for humanity, if you can’t look back on having given love and attention to your own family, what have you really accomplished?” Lee Iacocca, businessman

“Family is not an important thing. It’s everything.” — Michael J. Fox, actor

“It is not how much you do, but how much love you put in the doing.” — Mother Teresa

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” Lao Tzu, philosopher

“Caregivers attract caregivers and live in a community of love. They are energized by their caring, fulfilled, and they love life.” Gary Zukav, author

Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter